Article for ACPA about Nathan: "Purpose Behind the Cleft"

Has it really been over 2 years since I've blogged on here? Wow, being in college again really makes writing a challenge. I thought I would share a recent article I wrote for the ACPA, which is the American Cleft Palate-Craniofacial Association. It was really well received on their site, and I'm so glad I got the opportunity to share my story and spread awareness about cleft palate, and how it has led me to pursue speech and language pathology. Here's the link to their site Purpose Behind the Cleft, and I have posted the article in its entirety below.

A little over 6 years ago, my life as a mom changed forever. Our two older children each had their own medical conditions that put us to the test, and we were hoping for a healthy, normal baby throughout my third pregnancy.

Our son Nathan was born full term, but he couldn’t nurse and had mucous discharge coming out of his mouth and nose. The nurses took him away for observation, and I sat with my husband in the cold hospital room, listening to the heart monitors beeping, wondering what could possibly be going on. Hours later, the nurses returned to tell us the news: our baby was born with a complete bilateral cleft palate. I knew nothing about clefts, other than that it was a facial difference and that I had seen commercials about it.

Before we knew it, we were being taken to the NICU. A whole team of doctors had arrived to run tests and ask me questions. One of the nurses wanted to show me his cleft palate. I was scared to look. She opened his tiny mouth as far as she could, and I saw it–a huge hole in the top of his mouth. They explained that he would need surgery to correct his palate before he turned one. I felt comforted by the team of doctors and professionals supporting us from the beginning. I knew we wouldn’t be doing it alone, even though we were venturing into unknown territory.

Nathan saw doctors and specialists on a weekly basis at the ACPA Approved Team at Loma Linda University Health group–a plastic surgeon, ENT, and the entire craniofacial team. The speech therapist and nurses helped me through those early months and made sure he was developing normally. Genetic testing was done, and it was discovered that he had a small duplication of chromosome 22, which was very rare, and which likely caused the cleft palate. He had the palate repair surgery at 9 months old, and after the surgery he developed a fistula, or small hole, in the opening of his palate. I was terrified that we’d have to do the surgery again, but the plastic surgeon recommended waiting to see if it would close on its own. I am proud to report that as of today, it is a VERY small hole, which Nathan really likes – it allows him to make his special “clicking” sound.

Our team at Loma Linda University was there for me whenever I had a question, and they made sure Nathan got the best care possible. Nathan began speech therapy at 18 months old to correct articulation and catch up on language development. I got to sit in on his weekly sessions, amazed at the progress he made. Speech therapy seemed like magic to me! I started thinking about going back to school, and I looked into speech therapy. I was lucky enough to finish a 2nd bachelor’s program in communicative disorders at Utah State University and then receive acceptance to a master’s program in speech and language pathology at Idaho State University, where I just finished my first semester.

Now that I look back on the early years with Nathan, I can see purpose in everything. Yes, we wanted a healthy, normal baby, but you know what? He was healthy, and he is normal. If it weren’t for Nathan’s cleft palate, I would never have been able to sit in on speech therapy sessions and see how wonderful that profession is. I can’t wait to give back to other children when I graduate–to give back to children who are like my Nathan.

Give your Child Time to Blossom

 

I love gardening. I'm not a professional, but there's just something so exhilarating about seeing growth and progress over a period of time, and knowing that my own hard work helped create that—I water, I fertilize, I tend, I protect, and I let mother nature do the rest.

Last spring, I was really ambitious. I bought 8 different berry bushes and had them shipped to my home. They were basically sticks with roots attached. I planted them in pots with good soil, watered them, and watched all summer as they slowly took shape. The vines began to grow, leaves sprouted, and we didn't get berries this year, but I hoped that I could keep them alive during the winter to see them grow again. I worried when they lost all the little leaves and appeared to be dead in their pots, and hoped my investment wasn't in vain.

Last fall, we bought three fruit trees: a peach, pear, and orange to add to our young pomegranate tree. We made sure to plant them very carefully with room for the roots to grow. They lost all their leaves during the winter. I could only hope that they would thrive again in the springtime, and the only way to find out was to wait.

So I waited through the colder days of winter and watched. Many days and even weeks went by where I didn't give those bushes or trees a single thought--they all sat there lifeless in our yard. Toward the end of January, I went outside to look at the berry bushes in pots and noticed their roots had extended into the dirt below through the drainage holes. They were still growing, though they appeared completely dead. The proof was in the roots. And soon after that, our fruit trees grew tiny buds. Life was still happening despite all the deadness. To me, it is a miracle, this cycle of life in nature. And with our own children, we can see miracles, too, though at times, we might feel like their progress is dead as the winter.

 

Even when it seems like your child is not making progress, remember: growth is still happening. After the dead of winter, a tree will blossom. Give your child time to blossom.

Parenting special needs children means you have to give great care and attention. Yes, mother nature is helping, but the watering, fertilizing, and tending are often doubled--and it's often done by more than just the parents—doctors, therapists, special teachers, case workers, specialists, extended family can all lend a hand. But the biggest factor in change will be inside themselves--there's only so much you can do. We can give them roots, but they need to blossom on their own.

My three children have each needed extra care. My oldest, on the autism spectrum, had to be taught many times to learn a new skill. While other children might blossom after a gentle gleam of sunlight and a trickle of rain, she would need full sun and rainstorms. I still remember when she was a little toddler and motor skills were a challenge. After intense physical therapy and working with her at home myself, she blossomed into a walking girl at 20 months old. No matter that she did it later than her peers--she has her own life cycle she's following, and though it was hard for me to be patient, I had to let her bloom on her own time.

Soon after her walking took off, I began to notice that other body movements did not come naturally to her. Stepping off of curbs or walking down stairs was frightening to her. At the playground, she couldn't figure out how to climb a small ladder to get to the slide. So I worked with her, every day, putting my hand over her hand, then my hand over her foot, guiding her, teaching her the movement of climbing a ladder until it became natural to her. There were dead periods during this time, where I felt like my efforts were in vain, like I was looking at a dead tree with no life or hope of progress. All I could do was hold on to the hope that the little things I was doing with her every day were somehow adding up inside that tiny body of hers, and that when the winter of this learning season passed, she would bud and bloom. And one day, it happened--she climbed the ladder without my help. It was so sudden, quite like how the blooms on a tree seem like they would never come, but then one day, they're there. Growth was happening, on the inside. It was up to her to bloom, and she did.

A similar experience happened with my youngest, who was born with a cleft palate. We were told that he would probably not need speech therapy after his palate repair surgery and ear tubes were placed, but soon after his first birthday, his speech began to regress. I feared autism, but it turned out that the ear tubes had fallen out, and after they were placed again, his ENT recommended speech therapy to help him catch up.

So when he was 18 months old, we began speech therapy. I would take him once a week, and watch as the trained speech therapist worked with him and listened to the sounds he would make. We began to see that some of his sounds were coming out nasally--a common thing among children born with cleft palate. The therapist would help him focus on one sound at a time until he could say it right. First it was "D." And after taking him to therapy for months, there was still little progress—a dead spell, where I felt like maybe this therapy wasn't paying off. But then one day, he blossomed. He spoke the "D" sound correctly, like it came out of nowhere. Those little roots were growing all that time. And again, it was up to him to bloom. We helped him plant the roots, and he showed the fruit of our efforts beautifully. After that, there was no stopping him. He mastered sound after sound. Currently, he is in a dead period with the "S" sound. But I don't doubt the roots are growing fine on that one, and that he will blossom in his own time.

Growing a garden is a lot like raising children. It takes patience, planning, effort, care, and nurturing. But most of all, it takes hope, and willingness to never give up on the little things that will eventually grow from all the effort. The blossoms will come and the joy will be great--even greater than the joy of seeing new life sprout in my backyard.

The Standoff: Parent Vs. Preschooler

 

It was a typical scene in a typical old town. The old-timer cowboy vs. the rookie cowboy in a standoff.

The old timer twisted the heel of her boot into the dusty road, gripping her trusty weapon: a controlled temper. Her eyes stared straight ahead into the eyes of the rookie, as if to say, "Go ahead--make my day."

Now the rookie might be young (and very short) but he's got new tricks up his sleeves. While flashing his dagger eyes he whipped his arms across his chest and folded them tightly as if to say, "Oh, yeah? Try me." He held his razor gaze fiercely, the daggers piercing the weak spots of the old timer.

The old timer flinched, but only for a split-second. "Haven't seen that move before. You are wise beyond your years." She clenched her weapon tighter. He disobeyed me, so I have to follow through. Don't lose control. "If you want your light saber back, you need to say 'I'm sorry' and lie down on your bed." It was a simple request, but the rookie wasn't backing down.

He tossed out his next tactic: the tantrum. He fell to the ground, kicking and screaming and crying.

The standoff was heating up. Onlookers from nearby, leaning on the wooden railings of the tired town stores, shouted to the old timer: "He's losing it! What are you going to do?"

The old timer steadied her grip. "Don't worry. I've got this. I won't give in." She wielded her weapon of self control like a triumphant flag, and gritting her teeth, repeated, "All you have to do is say 'I'm sorry,' lie down on your bed, and the light saber is yours." Even with her grit, she said it so smoothly that it pierced the rookie to his core.

It was the ultimate battle of wills. Who would give in first? The standoff was reaching its peak. You could almost hear the other cowboys in town whistling in the background, the wind whipping the women's long skirts, the men spitting into the dirt.

The old timer remained cool as a cucumber while the rookie reverted back to the stare-and-glare, arm-fold stance. "You know what you have to do," the old timer said.

The rookie whispered faintly the words, "I'm sorry." He took a step back and sat on the edge of the bed and glared daringly at the old timer, as if to say, "There. I'm on my bed. Are you happy now?"

The old timer dropped her weapon of self control to the ground. He's not lying on the bed--he's just sitting on it! But before she lost her cool, she glanced at the clock. She took off her boots and rubbed her weary feet and thought of the long day with the rookie. Well, we can meet in the middle--THIS time, she thought. She took off her cowboy hat, put on her mother hat, and stepped into the room. The rookie lost his rigid stance and put on his child hat. The mother and the preschooler cuddled and read books together until he drifted to sleep.

As she tiptoed out of the room, she wondered where his strong will and determination came from. After all, he was just a rookie. Maybe he takes after his mother, she thought. She smiled and headed downstairs to meet the onlookers in her little old town and wielded her weapon for the next standoff.

Two more children to go, she sighed, clutching the weapon. "Go ahead, make my day."

But Julianna Doesn't Have Red Hair, Mommy!

Sometimes Nathan says really cute things, and I want to record them in more than just a little Facebook post. Putting it on my blog means it will be more easily accessible. Today we had one of those moments that I want to remember.

On the way home from picking him up from school, I asked him what color his hair was. I like to ask him this to see if he will say "red" or "orange."

Me: Nathan, what color is your hair?

N: Uhhh....ORANGE!

Orange. Of course. Each of my redheads has always said orange, because it IS orange. Not red. Why do they call them redheads, anyway? I decided to ask more questions.

Me: Orange? Okay, it is orange. What color is Blake's hair?

N: Orange!

Me: Yep! His hair is orange, like yours. And what about Julianna?

N: Uhhh.....BROWN!

Brown? Really? That was a first from him.

Me: Brown? No...her hair is orange, like yours, silly!

N: NO! It's BROWN!

Me: Hmm...okay, Nathan.

We made it to the kids' school and waited for them to walk to the car. When he saw Julianna approaching with Blake, he yelled, "See, Mommy? Julianna has BROWN hair!"

I looked at that tall redhead walking toward us, her red curly hair shining in the sun, and had no idea why he thought it was brown. It is really thick, but other than that, I'm not sure where his color confusion is coming from. Regardless, I think it's cute.

Julianna got into the car, and I told her that Nathan said her hair is brown, not orange or red.

Julianna promptly corrected him: "No, Nathan, my hair is RED, not BROWN! Got it?" She likes to say "got it" lately. And I'm glad she's reached the level of maturity where she knows her hair is red, even though it's actually orange.

N: No, it's BROWN!

J: No, it's RED!

Me: Okay, that's enough. Let Nathan believe what he wants.

The conversation turned to school day topics and that was that. It makes me wonder, though, if I asked Nathan next week the same question, what he'd reply. There's no denying my kids each have red hair!

Nathan's Name Change Fiasco

When Nathan was born, things were a little hectic in the hospital. Because of his cleft palate, we had many doctors and nurses visiting and giving advice. And of course there was the usual push for all the paperwork, which we did throughout our stay.

We decided to use my grandpa's name as Nathan's middle name. He passed away a few years before Nathan's birth, and we thought it was a great way to honor him. Blake, my other son, has my other grandfather's first name as his middle name. So we liked that we could honor both grandparents through our kids.

When it came time to sign the social security form with the official name, we mistakenly wrote my maiden name as his last name on the form (what my grandfather's full name is). Even though both Joel and I reviewed the form, we did not notice that the wrong last name was printed, probably because we know my grandpa's name well. So it got sent off to social security, and we went home with our newborn. I spent the first few weeks learning to pump for him, and to feed him with the special bottles. Things were still hectic.

Then we got his social security card in the mail. I opened it, and didn't even think anything was wrong. My husband looked at it and didn't notice, either. Probably a few days went by before I did a double take--"Oh my gosh! That's not his last name! It's my maiden name! My grandpa's last name!" I told Joel, and we both laughed about it, and didn't think much of it. We had no idea how much Nathan's social security card would affect things down the road...

First problem: filing our taxes the following year. The IRS would not accept them, and we could not figure out why. We called, and were told it was because the name of one of the family members did not match the social. So we had to put the name shown on his card to have our taxes accepted. Not a big deal, we thought. We'll just remember this for next year, and change his name when we could. How hard could it be?

Life continued to be busy with all of Nathan's doctor appointments and feeding around the clock. Then came time for his surgery, and many follow-up appointments. Another year came and went, and it was time for taxes again. We forgot about the name issue. It was another reminder that we needed to get that changed! So in the summer of that year I went on the social security website and printed out some forms. I sent in the paperwork and waited. It came back denied. I called them. They said we had to go through the court system to have his name legally changed. I was astounded. I told them it was a simple mistake made in the hospital. They said it didn't matter. Still, it wasn't a pressing issue for us...yet.

Early the following year, 2015. Nathan is now two years old. We had to change insurance plans for the kids. This new insurance required a birth certificate. I still hadn't gotten him one (yes, I am lazy and usually wait to get one until I NEED one.) So I went down to the vital records office. They had to print his birth certificate with the name on his social security card. And because I needed one for him to get insurance, I had no choice but to pay for a birth certificate with the wrong name. I vowed, then and there, to get this name change taken care of. The courthouse was in the same area as the vital records office. So I went through their lovely metal detectors and talked to a clerk. They gave me a big packet of information on how to get a name change. They told me the court fees were $450 per person, per petitioner. Joel and I were on the original form. This meant $900 for a little mistake in the hospital. Mistakes can be costly!

The big stacks of paperwork sat in a file for a few more months, until fall of last year. I had some time to figure it out, and went back to that courthouse ready to tell my story. I had the paperwork filled out. I explained that it was a simple mistake, and we just needed the last name changed. They agreed to waive our court fees. HUGE relief! They scheduled the court date for January 21, 2016. Our next step was to have a local paper publish the official name change in the paper for 4 consecutive weeks, just in case anyone objected to the new name and wanted to appear in court. Really? I told them NO ONE would care. But of course, I had to follow protocol.

After I left the courthouse, I called the newspaper and asked how much it would cost to have this printed for four weeks. $110, they told me. Well, it's better than paying the $900, I thought. I bit the bullet and paid the fee. We got a letter in the mail from the newspaper after it was published.

January 21st came. Joel had to take a day off work to come with me. The appointed time was 1:30. We sat in the waiting area with other adults and lawyers. The court clerk came out and asked who was there for a name change. We were the only ones. He said we were first. Hallelujah.

We walked into the courtroom. Another clerk asked if we wanted a court reporter for this case (the person who types on the little keyboard). If we did, we'd have to wait another 20 minutes for this person to arrive. We told them no, we don't need a court reporter. We stood as the judge walked into the room. We had to raise our right hands and swear to tell the truth. She asked us to come to the front, and give her the statement from the newspaper. Once she looked over that, she simply said, "Okay, we are here to change the name of your son from Nathan ___ ____ to Nathan ____ _____." She spelled his new name in full. We said yes. And that was it. We were dismissed. It took literally 30 seconds to get his name changed. She said we could come the next day to the clerk to get the official form with her signature.

This morning, I went in to get that form. I asked the clerk what my next steps were. She said she had no information for me. Wow, so helpful at these places. She gave me the paper and I began to leave. As I walked toward my car, thinking about how happy I was that I would never have to set foot in that place again, I felt inspired to go to the nearby vital records office to ask what to do. The clerk there said that my next step was to change his name with the state. She gave me some forms and a giant packet. Once the name was changed with the state, I would be issued a new birth certificate (that I would have to pay for, again), which I could then send to social security, and this whole mess would be behind me. I felt relieved, knowing I was closer now.

I got home and reviewed the packet from the vital records office. It said the name change form from the court needed to be "certified." I looked at the form that was printed for me. It certainly didn't look certified. I called the courthouse and asked if it was. They said no, it's not certified, and that there was a $25 fee to have this done. Really? So not only did they give me a useless piece of paper, but they also didn't even care to ask if I needed it certified for getting the name changed through the state. There is absolutely no communication between the court system and the vital records office at all. I asked if they could certify the record in their office, and have it sent to me in the mail, since I was just there this morning. No, it had to be done in person.

Guess where I'm going again tomorrow? My new hangout, the courthouse. This should be the last step in getting Nathan's name corrected, once and for all! I'm sure my grandpa is laughing in heaven over all of this! Would you look at that little face, though? I guess all this trouble is worth it!

My advice to anyone who has read this: make sure you fill out forms in the hospital correctly!

7 Reasons Patience is Essential to Raising Special Needs Children

Perhaps the first attribute I discovered that I lacked after become a mother was patience. Raising a special needs child means waiting, a long time, to see any progress. And at the same time, it means learning to control your anger or frustration, trusting that things will get better. Though I am still learning how to be patient, I wanted to share some ways that I have begun developing this crucial characteristic:

1) Realize that progress will not happen overnight.

Over the years, I have delved into many different therapies for my daughter on the autism spectrum. Vision therapy was one that intrigued me about 5 years ago, and though it was costly, and very time intensive, I went for it anyway. I would take her out there, the doctor would show us what we needed to do, and send us home with a packet full of stuff to work on before the next week. So we'd try, really hard, to incorporate this therapy into the others she was doing, and after a few months of not really seeing any progress, and feeling defeated by my inability to be dedicated to this home program, we quit. I never saw the progress that could have resulted because in addition to giving up, I also had the attitude of, "This isn't going to do anything for her. Why am I wasting my time?" I never gave it enough time to show results. I wanted the progress to be quicker, and I wasn't willing to put in the time to see it. So I threw in the towel.

Raising special needs children is a process, a commitment. You will not see amazing things happen right away. It's not like curing your child of a common illness where you know the end will come. For special children, the end is indefinite, undetermined. And because of this, you will feel weighed down by lots of behaviors and overwhelmed by lots of therapy appointments. Just do the ones you think will help your child (and you will know, I promise), and be dedicated to them, for the long haul. You will be able to look back on the many years of speech or occupational or physical therapy and see what a difference it has made. If you give up, you will never know how far they could have gone. Be patient, keep going, and don't throw in the towel.

2) It takes daily practice and dedication.

So building on the first step, realize that patience is key when it comes to the daily things. The skills that might come easy to typical children don't to special needs children. I still remember when my daughter was a toddler, and I wasn't sure what her disability was, and was even denying she had one. We had a little playgroup at the park once a week, and I would see kids her age climbing the ladder and going down the slide, with smiles on their faces. My daughter wanted nothing to do with those things, and was even fearful of going on the playground. So near our house there was a little park, and I would take her there every day and teach her how to climb the ladder. She physically could not make her legs and arms work to do this, though typical children learn on their own. I would put one hand on her leg, another on her arm, and guide her from step to step. This took months of practice, but it paid off, and she learned what many would consider a very basic skill. But to me, it was even more rewarding knowing our daily practice was successful.

Special needs children need repetitive, daily practice to learn skills. The way I see it, their brains are wired differently, and it's our job as parents to help them connect the little wires to the right places. And this will only happen through constant, monotonous, continuous practice. It can feel draining thinking about how far they still have to go at times, but again, keep going. Each practice session to learn a skill is like a new step on the ladder for their development, and eventually they will get to the top of that ladder, with you by their side.

3) Don't compare your child to others.

This is very easy to do, even now that my daughter is almost 12. One skill that we've been working on for years now is swimming. She is still deathly afraid of swimming in a deep pool, and because swimming isn't typically something you can practice all year, she loses the progress she makes each summer and it feels like we are starting over. We felt this again as we started swim lessons a few weeks ago. And I have to admit, looking out at all the kids swimming independently in their group classes, and then seeing my daughter with her private teacher, still struggling to just put her face in the water, was a little disheartening. But I tried to focus on the progress she made during those two weeks and not even care what others were doing. After all, she's only going to go as far as she is comfortable doing--I can't force progress--it's going to happen naturally. And for her, she did hard things. But if I were to compare her to the other, much younger children, I would always feel defeated.

As parents, we want to be proud of our children. We want to celebrate the milestones and achievements they make. But with a special needs child, most of those milestones either don't exist or come much later. This can rob parents of the joy and pride they feel in raising children. But if we watch patiently, and carefully, we will be able to see the progress of our child, just our child. And really, that's all that matters. You will never be a happy parent if you are comparing your special needs child to other children, or even other special needs children, for that matter. Each child is born with a unique potential, and as parents, all we have to worry about is helping them get there.

4) It means you will have to make lots of sacrifices.

If I were to add up the many hours I've spent on the phone advocating for my daughter, or writing emails or letters for IEP meetings, or driving her to different therapies, the number would be staggering. Just when I thought we'd gotten through one tough hurdle, whether it be for school or a medical issue, and we could finally take a breath, another one would pop up. And this pattern has continued and always will, because my daughter will always have needs, and I can't give up on being a parent. She is depending on me to help her achieve, and I am helping her become as independent as she can be. I have never regretted the many countless hours I've spent on her behalf, because she is worth it. Now this doesn't mean I don't make time for myself, because that is important. And if I don't get it, I will most definitely lose my patience more during the stressful times. But it means that if there's a problem, I am willing to sacrifice whatever time, hobbies, interests, or pursuits in order to solve it. Nothing is more important than that.

No one really likes the word sacrifice, but being a parent is all about it. And because special needs children need lots of extra help, parents will have to sacrifice their time and interests in raising them. Ezra Taft Benson said, "We love what we sacrifice for, and we sacrifice for what we love." We love our children, regardless of their challenges. We are willing to do anything to help reach their goals and succeed as much as possible. It all comes from love--we do it without second-guessing because we love our children.

5) Others will notice the progress in your child more than you. Believe them.

My youngest child was born with an isolated cleft palate. Even though he was born at a healthy 8lb 15oz, his inability to feed like a normal baby caused his weight and height percentiles to slowly taper down to just 1% right before his surgery. He was a tiny thing. But after the surgery, he quickly gained the weight back, and then began talking right after age 1, and then began losing speech because his ear tubes fell out. He then fell a little bit behind and started speech therapy and early intervention classes to help catch up. And during this time of ups and downs, I wasn't really noticing his progress because I was so worn out by chasing him around and basically keeping him alive. But others noticed his speech improving, and his weight climbing steadily, and would comment on this to me.

I find it interesting when we see family members that we haven't seen in a while and they remark that our children look so grown up. Of course I then look at my children and think, hmm, maybe they're right, but I don't see it! The same is true when measuring progress in special needs children. Family members will notice improvements after a long period of time, and your first reaction will be to disagree. But don't do that. Just believe them. You can't see it because in the thick of all the appointments, IEPs, tantrums, giving baths, brushing teeth, getting them dressed, it is easy to be blind to the progress your child is making. Many times, the stress of parenting overshadows the little milestones your child is reaching. But in those good moments, where you feel like you can do this parenting special children thing, you will notice, and you will feel rewarded.

6) It means you can't quit--this is your job.

If you give up on the daily practice, the skills will be lost, and you will be starting over again. One skill that my daughter just mastered is showering. On and off over the years, we have worked on it together. We would make some progress, but then I would grow tired of doing it, impatient, and stop for a while. Each time we went back to it, it was like we were starting over, trying to connect those little wires in her brain again. But earlier this year, I became determined to conquer this skill, so we went at it hard, and she was successful. But we had help--it wasn't just me.

I've never worked full-time outside the home. Mothering has been my job from day one. And each of my three children have been born with unique challenges that have tested me and will continue to test me, that have exposed to me my weaknesses, that have brought me to my knees. There have been days where I wished that I could just walk out that door, that I could change my circumstances. But I can't. This is the job I have been given as a mom, and these kids are depending on me. But it doesn't mean I have to do it alone. In addition to my husband, I have found so many resources. In-home services that provide therapy, respite workers that watch my children, friends that I can lean on for support, teachers that have done everything to help my children, aides that have been life-changing. Without them, I just might have walked out that door, long ago. If you feel like you are headed that way, ask around for help. And be patient, you can do this. Being a parent isn't just a full-time job, it's a lifetime job, and you have the right skills for the job.

7) It will either make you a better person, or a bitter person.

When you find out your child has a diagnosis or disability, there are two paths you can take: the better path, or the bitter path. You might travel down the better path for a while, feeling confident in your abilities, and suddenly find yourself feeling overwhelmed by it all, and start trudging down the bitter path. I have been down both, and found that the bitter path is much harder to get off of. Once you are trapped in bitterness, it's hard to go back to that "better" person. I know that raising special children is always challenging, but challenges really are to help us discover how strong we are. Staying on the better path seems easy in the beginning, but as the years go by, you start to feel bitter, because you feel like maybe all this work and effort isn't worth it. What it comes down to is your patience is gone, your ability to endure. And so you have to dig deep, to find that strength again, so you can keep going.

I have a picture of our family when my daughter was only 19 months old, and I keep it on my bathroom mirror so I can look at it every day. At this age, she looked so cute and innocent. Someone had told me she thought my daughter had autism, and I had just begun exploring the idea, though at the same time I was trying to push it out of my mind. Because I didn't really know yet, and because I had no idea what the future held for our family, I was much more positive. Now, 10 years later, I look at that picture and think, this is where it all started. This is where I started on my better path, and strayed to the bitter path over time. I think I am wavering between both, but really striving to stay on the better one. It is possible to stay there, as long as we are patient and positive. Raising special needs children has been an adventure, a blessing in disguise. And I will keep moving along, patiently, because of the love I feel for my children, and the love they have for me.

More Prayers Answered, and How to Play the System

My last post talked about how Nathan's early start class regulations are changing, and since then, I've sent another email to the directors at our regional center and been vocal about my concerns. Other parents have done the same. We've also been praying that something would change. I didn't know what might be happening until today, at Nathan's annual meeting with his case worker from the regional center. Lots of surprises at this meeting!

Recently, Nathan's teacher did an developmental evaluation and his scores were above his age level. Now his class is supposed to be for children who are developmentally delayed. And when he started, he was delayed, just enough to qualify. His teacher warned me that regional center might cut services for him. So going into this annual meeting, I was prepared, but still not sure what might happen. I was asked a series of questions about his development, and once it was scored, he tested at 34 months for expressive language and 30 for cognitive ability. He's 30 months right now. In order to qualify, he has to have a noticeable delay, obviously! So we talked about how he might be transitioned out after 30 days and at first I was fine with this. He has improved dramatically! He is not at risk for autism or any other diagnosis. His chromosome duplication could have caused any number of issues, but it hasn't, and I am glad. But there was one reason why I need to keep him in these services, and it is a big one! This is when you have to know the system of special needs services and how they work, or Nathan would have been dropped, no question. And because of my experience with Julianna, I knew that there was more we could do.

At 33 months, a child with early start services will be given an evaluation with the local school district to transition the child to services that begin at 3 years old. This meeting is very important for Nathan because he gets speech therapy, right now through our health insurance, and it's a 40-min drive one way for me. Once he is 3, however, the therapy will be provided by the school district. Plus he will then have an IEP (Individualized Education Plan) with the district, which means he can also qualify for preschool at his same school through a special grant. I knew all of this because I've been talking to his teachers and trying to get a better understanding of how it all worked. If I were to allow Nathan to be discharged from regional center at 31 months, I would be two months shy of that important meeting. And this would delay his services, because once you are out of regional center, your child is treated like any other child in the district, and my wait time for having the evaluation for speech would be delayed, and might not have been considered as highly. So how would I get his services to continue for two more months, even though he clearly did not qualify anymore? His case worker understood where I was coming from and wanted to help me. And she was willing to help me work the system a little to get there.

I brought up the fact that my daughter has autism and receives services, and that puts him a higher risk, along with the chromosome 22 duplication. I told them that Julianna was discharged, at my request, from the regional center at 2 1/2, and it wasn't until after 3 years old that I noticed more symptoms and it then took years to get her back in the regional center. I didn't want this to happen again. I wanted to be absolutely sure that Nathan would be okay. She agreed, and noted that I requested at psychological consult for Nathan. And because these consults cannot be scheduled quickly, it would definitely put him right at that 33 month mark. Mission accomplished. The system works, as long as you know how to use it. Nathan will get his very important transition meeting before 3 years old, and there will be no delay in services. And hopefully, he will continue to attend this school at 3, assuming he gets the grant. But that wasn't all...what about the change in requirements? Would I still have to attend with him every day to qualify for the early start class?

She told me that regional center has since changed their ideas and come up with a way to transition the kids. (This is exactly what I've been emailing them about, by the way.) For the kids like Nathan who have already been attending the class, the parents are not required to stay, and they will phase out like normal. But for the kids who are just coming in, the parents will need to stay because the regulations have changed. She is hoping that this will be the final determination, though she's not sure yet. Either way, this meeting was wonderful!

I have learned SOOO much about special education laws and how to make sure my kids get the services they need. Maybe I should become an advocate?? And I'm so happy that our prayers have been answered. I'm so glad that Nathan will get what he needs to continue progressing. We are so happy to have this cute little guy! He has a bigger-than-life personality and a temper to match, but we love him!

Too Good to be True

Over a year ago, I called our local regional center because I was concerned Nathan was behind in his development, especially speech, and they came out to evaluate. I told them about his cleft palate and chromosome 22 duplication, and that it could cause global delays in development and other areas, and they did not hesitate to offer him services. At the time, it was a home program where he would have a teacher come for 75 minutes, once a week, and play one on one. It was great for him, and I loved his teacher. But she decided to get another job to care more for her baby last fall, and she then told me about the center-based option. Center-based? She explained it was like a small little preschool class for 18 month to 3 year olds where they would work on developmental skills. How often is that, I asked? Three days a week, for 3 hours and 15 minutes. I was stunned. So I could send Nathan to a little class with 8 other kids and 3 teachers, 3 mornings a week, for free? And he will develop socially, emotionally, and academically? FREE? Funded by Regional Center, no less. Sign me up! I was so excited for this opportunity and felt completely blessed by it. Nathan could make little friends and I could get some me time during the mornings. Sounded perfect.

And it was, and has been, until just last week, when a letter was sent home to the parents saying that Regional Center has changed their guidelines in order to receive services. Instead of allowing parents to drop off their kids and come back later, one parent or guardian now has to stay with their child the entire time, each day, beginning July 1st. This was to help facilitate more parent involvement at this young age, part of the state's rules regarding early start intervention. What? How could this be? My wonderful me time would be gone! I would have to stay with him? But why? What good would it do for me to be there? He's learning independence! He's learning classroom procedures! He's growing so much, without me there! And how would every family be able to meet this new guideline? What about parents that both work? Or don't have family close by for support? How would all these precious little children get the crucial early intervention they so need?

I talked with his teachers and other parents that day the letter was sent home, at the end of the class period. Everyone seemed in agreement that this new rule was unnecessary. I told them that I would be more than willing to make some calls and take action, that I'd done it before and I would most certainly do it again.

So I first called the Department of Developmental Services (DDS) and told a director there if she was aware of this change. As far as she knew, the laws for early start had not changed one bit. So I found out, to my knowledge at that point, that our regional center was not truthful about why they had to make this change. They said it came from the state and that there was no other option.  But the DDS did reinforce their views on parent involvement in early start intervention and how important it is to see better results, and told me to call the regional center.

So I called the regional center, but of course got voicemail. Friday came, and no call back. So I wrote a carefully crafted email stating why it was not a good idea to require parents to sit in with their child for the entire 39 hours of early start class, and gave some alterative options, like having a monthly parent training, or weekly meeting with the teacher. Monday morning came, and I didn't get a reply. As I began driving Nathan to his craniofacial appointment around 9 am, the thought occurred to me that I would be just 2 minutes away from their main office, and that I could easily stop by in person to fight this issue. And having Nathan with me would be even better! How could they look at his cute little face and willingly make these life-changing services more difficult to obtain?

I called on the way to the appointment, and finally got through to the secretary of the early start director at regional center. I told her no one was returning my calls, and that I wanted to come today, in person, to talk to someone. She took the message, and I headed to the appointment. Toward the end of Nathan's visit, I got a call back from regional center. Another director called me back to let me know the only person I could talk to would not be back until later in the afternoon, and that she would make sure to have her call me today. I was very hesitant, but agreed to let her send the message.

Earlier this afternoon, to my surprise, the early start director did call me. We had a very nice conversation, and she told me that the regional center was audited last year for not complying with the parent involvement guideline. She said Nathan's school is one of only TWO schools that provide a center-based option, and that this model has been done away with all over the state of California. The model elsewhere has always been a "mommy and me" where the parent would be in attendance to help teach their child as the teacher taught them, so they could then go home and reinforce these new skills. This "drop-off" idea is no different than getting day care or preschool, and it hadn't been dissolved at Nathan's school yet because of how well the program is received in the area. Children under 3 need to learn in their natural environment, or with parents in a community setting, like library story time.

As I listened to her describe all of this, I began to realize how lucky I really was to have had Nathan in a class like this for as long as I did, and maybe it was too good to be true, that my reasons for fighting this change were mostly selfish. I remembered when Julianna was first offered early start services at 18 months old in Utah, and I took her to a class with little children of all disabilities. I sat there with her and watched as all the other moms helped their children with different skills, like drinking from a straw or cup, or stacking blocks, as the teacher facilitated the group. I remember the feeling I had being there as a young 23-year-old mom, scared to death of even thinking that anything could be wrong with my child, and because of how scared I was, I NEVER WENT BACK. I couldn't be there in that room with those children and parents. Not yet. And now, here I am, 10 years later, with my youngest child, and I might have to do the same thing. I wonder if I will feel the same as I did 10 years ago? Am I ready to face all of these things yet? I think so, because this time I know Nathan will be okay. I was so unsure with Julianna.

At the end of our conversation, I told her that most parents will not be able to meet this new qualification, and that there needed to be some middle ground in order to have a smoother transition. I suggested that regional center provide a combination of center-based and home-based services so that the children could benefit from both. I said maybe a parent could attend class with their child just one day a week, and then another day that week someone could be sent to their home to work with the child one on one. She really liked this idea, and said she would present it to her directors and also the school to see if it could become an option. The conversation ended well, and I regretted somewhat my very forceful letter I sent just a few days ago.

 

So I won't have my precious me-time anymore in the mornings. I won't get to go grocery shopping by myself while he's at school and will have to again face the terror of having him in that grocery cart, seeing items being tossed to the ground as I shop. I'll be bringing him with me to the gym now, every time I go.  The me-time was good while it lasted, and it really was too good to be true. I was spoiled by having this free class for Nathan. And now I will be even more spoiled to see him interact with those little kids and his teachers, and feel more a part of his development. I think this will be a really good thing. Sometimes change is good. After all, he'll be 3 in 6 months, and off to preschool. Might as well treasure these last few months with him.

Answer to Prayers

So this month, Nathan has seen a few doctors, and it's been a little while since he has. He first saw his pediatrician, and he noticed that Nathan's ear tubes were no longer in place, and that there was a little fluid building in one ear. I wasn't that concerned because he seems to be hearing and speaking fine, and even hoped that he wouldn't need any more ear tubes at this point, since he's already had two placed.

Then two days later, he had a hearing test, and again, the audiologist noticed fluid. Again, I didn't seem concerned, until she took us to the little hearing test room with the big speakers that light up. Nathan sat on my lap and as he heard the sounds and saw the lights, he would turn from side to side like he always does. But then she lowered the volume, and I sat there as my little boy wouldn't even flinch while the lower sounds were played over the speakers, and I could hear them clear as day. Throughout the remainder of the test, he would not turn for those sounds, and I knew we weren't done with ear tubes just yet. The audiologist confirmed that he did not pass his test. I told her we were meeting with his ENT (ear, nose, throat) doctor the next week, so she was happy to hear that.

So this past Wednesday, I returned to the same medical office, this time for the ENT. I waited 90 minutes before I was finally seen by the doctor, which is not easy to do with Nathan who is a mile a minute kid, getting into everything around him. She took one look in his ears and knew he would need more tubes placed. I asked why his tubes keep coming out; after all, he just had some placed in April. She couldn't explain it, but only tell me that all kids have different outcomes with tubes, and that this time, she would be putting in "sturdier" tubes called T-tubes to see if they would hold up longer.

The other concern had to do with Nathan's health insurance, which will expire at the end of December. The new insurance for January is going to have much higher copays, not to mention a wait for all the referrals and authorizations to go through, so we had been praying that there would be a chance that Nathan could have his ear tube surgery before the end of December. I asked her if that was possible, and she told me to talk with the surgery scheduler before I left.

So I went back out into the waiting room for a bit, and by this time I had been at this place for almost 2 1/2 hours! Nathan was worn out and fussy. I got called back in, and asked if we could schedule the surgery for the 30th, and she said yes, but that I would still need to see the anesthesiologist before the surgery. So she looked for an appointment for the pre-anesthesia, and it turned out they had an opening the same day at 1:15, just down the road. I took it, glad that I wouldn't have to try squeezing in an appointment right before Christmas. So Nathan and I went to get some lunch, he took a nap, and we headed in to our second appointment of the day. By this time, Nathan was super cranky. There are a number of steps you have to go through at this appointment, so it was another long one. But we got through it, just in time to get home to pick up the kids from school. Talk about a long day with a toddler.

But our prayers were answered, and we now get to avoid a large copay. Nathan's health issues sure keep us busy, and me very tired, but I am so blessed to have great doctors relatively close by that can help with his different needs.

Nathan's 2nd Birthday

Nathan turned 2 today! The time has gone so fast with him, maybe because it has been a busy two years. And it's not slowing down a bit, now that he's in his little early start class three days a week, speech one day a week, which leaves Fridays for us, and I'm glad his birthday was on a Friday. His language has really picked up in the last couple of months. On Wednesday, his speech therapist did an evaluation, and I was shocked at how many pictures he could identify with words. He is well beyond the 2-year-old speech level, but still has trouble with some articulation, so he will continue speech therapy.

Here are some cute things I want to remember about him at this age:

-He is the only kid of mine to adopt a blanket and stuffed animal (his "goggie") as security objects, and cannot sleep without them.

-He loves the show Curious George, and asks for "Monkey" or "Gorge" (not misspelled, that's how he says it) all the time. He also likes Daniel Tiger's Neighborhood and the Wiggles.

-Before he can go to bed each night, he runs to Joel and says, "Moon!" because it's now their little ritual where he will take Nathan out there and look for the moon. Nathan is always very excited to find it.

-The other night, I wanted to give him a kiss on the cheek, and I said, "Kiss!" and instead of letting me kiss his cheek, he grabbed my face and made me kiss his lips. I'm not much of a kiss my kids on the lips mom, but it was so cute I had to do it.

-He throws tantrums about things when I take him grocery shopping. The other day, we were in line buying diapers and wipes, and the person in front of us had a big bag of apples. He saw them and screamed "Apples!" at the top of his lungs until we got to the car. He actually did this one other time at a different store for bananas. I need to be on the lookout for what people put on the conveyor belt!

-Earlier this week, it rained for the first time in a while, so I taught him the word rain, and while we were in the car, he thought it was so neat to watch the rain fall and see the windshield wipers. Later that night while putting him to bed, he suddenly said to me, "raining" and pointed to the ceiling and said "water, sky." He picks up on things really quickly.

-Today we've been practicing his age. When I ask how old he is, he says, "Do!" and tries to hold up two fingers.

He can really be a handful most of the time, but I'm glad he has spunk and personality, and a whole lot of determination. He always knows what he wants, and will do whatever he can to get it. We're so happy we have Nathan in our family!

Miracles

I hope I don't jinx myself by writing this post, but I really think a miracle is happening in our house, right now. I don't know why it took so long for this miracle to happen, but it finally is. Julianna has not bitten her hands in anger or frustration for 9 days in a row. Nine days where our house has felt a little more normal, peaceful, and enjoyable. Nine days is a miracle, because we've been dealing with this troubling behavior for almost 9 years, pretty much daily. I almost don't want to believe it, but it really is happening, and it's all because of that 1, 2, 3 Magic program we are doing with her.

It's interesting that I've tried literally every method out there to rid her of this behavior. Chewelry (chewable bracelets and necklaces), flavored chew sticks (we got her chocolate), completely avoiding the biting, telling her to count instead of bite, putting gloves on her hands when she bites (which she hates the feeling of), physically holding her hands down and away from her mouth, the list goes on. Nothing has worked. I guess what I am realizing is that sometimes, when you are raising children, things don't always change when you want them to, no matter how hard you pray or try. Sometimes they change because you felt inspired to take them to a new doctor, who introduces you to a method that you think has no possible chance of working. And then you try it, and it does. It's a miracle. After all these years, we are starting to put this one troubling behavior of hers behind us, and that means our family can be happier. But most importantly, she can, too. She will feel better and more at peace with herself because she doesn't have that impulse anymore.

We are hoping to get to 21 days in a row (the time it typically takes to break a habit) and if we get there, she will get her new doll and her psychologist said she will give her a nice certificate and we can have a little party for her. She's just as excited as we are! When we met with her last Saturday, and told her all the progress she's been making, her response was, "Oh, praise the Lord." And she is right. It took a long time to get to this point, but we got there. And I've had to trust in God for all these years, believing that we could conquer this.

I have been studying the topic "Trust in God" in my scriptures this week. I think it was something I needed to really, truly understand in my life right now. On Monday morning, after I had a quick but meaningful study (you never know when your kids will come storming into your bedroom), I came downstairs and remembered Julianna had to do a make-up math test because she got a low score. We sat down to do these problems, and I thought, there is no way I am ever going to help her understand this stuff. How is she ever going to learn this? How am I going to find a way to help her learn? And how will her teachers and aide do the same? I felt very frustrated and defeated, but we got through it the best we could (mostly me doing it) and I let her finish getting ready for school. Just when I started to feel very down and hopeless about the entire school situation, I heard these words come to my mind: "Trust in God." I immediately felt peace and hope again, and tears came to my eyes. She will be able to learn it, just maybe not right now. But I think about how far she's come in school, and again, I think of the miracles we have witnessed. I never thought she could learn to read, and she has. I never thought she could learn simple addition, and she did. I never thought she could learn to spell common words, and she can, all by herself. Each thing we accomplish with her just takes time, much more time that other kids would need. But she will get there.

Other little miracles happening right now...Nathan knows about 4 colors and can identify them. He has been working with an early start teacher once a week for an hour for about 3 months now, and he's already met all his goals twice in that short of a time. He continues to amaze me every day, and is the friendliest little baby around. Everywhere we go, he waves and says hi to people, and brightens up their day with his smile. He tries to count objects, and he sings little songs, and he knows animal sounds, and he just keeps on progressing rapidly. I don't think anything will slow him down at this point.

And of course I can't forget Blake. Doing well in school, becoming more independent, writing his own stories just like I did when I was young, and becoming an excellent piano player. He even wants to play the flute and uses my old flute to practice on. Yesterday when I got home from the store, he opened the garage door with the flute in his hand, excited to tell me that he could now make two sounds out of it. I love seeing that he's excited to play instruments and wants to do well. And with all that he has to put up with in this house, he's a great kid. It's easy to neglect your child who doesn't need as much help and attention to do well in life, so I am trying to make sure I don't do this. He is becoming a great little guy and will be baptized in just 2 months.

And as for me, I am taking things one day at a time. I started watching the show "Parenthood" on Netflix because so many people have told me I needed to. Well, it has brought back all sorts of emotions for me, seeing these great parents deal with their child's Asperger's diagnosis and then try to figure out what to do from there. I've definitely been there and felt what they are feeling. And watching them go through this process has made me feel like I really need to work on healing the pain that still hides deep down inside me from all that I have been through. I guess it's easier to just hide those feelings away and hope they can stay hidden. But what I need to do is face all of them, and rid myself of them, and replace them with better feelings and hopes so that I can feel truly at peace. So I, too, will get there, will get where I need to be as a mom, as long as I continue to trust in God.

One Year Post-Surgery for Nathan

Tomorrow is a huge milestone for Nathan. It marks one year since he had his cleft palate repair. August 20th will be a day I will never forget. All the emotions going into a surgery are almost overwhelming. You have to make sure they are fasting, you have to get there super early in the morning, you have to pack for the hospital (which was supposed to be only one night but turned into 2 for Nathan), and you have to think about the moment when you will send your little baby away to the doctors who will be doing a very painful operation.

The holding area is lined with little cribs and beds where curtains separate the patients, each waiting for their doctor or surgeon to come take their child away. Every few minutes you would hear the squeaky wheels of another bed being taken down that long hallway, and hearing parents walk the other direction. I became very emotional each time this happened, but somehow, when they came to take Nathan, I was able to keep my composure. I knew he would be okay.

They sent us to a room in the hospital where everyone sits and waits, and stares at a large screen with numbers and colored codes indicating the progress of each patients' surgery. And the longer it takes, the more nervous we became. Nathan's entire surgery was only supposed to be 2 hours. But when it went past 2, then 2 1/2, we began to wonder if everything was going okay. But suddenly we saw the surgeon and his team come out, ready to tell us that it went well and that we could see our baby.

I will never forget how Nathan looked right after surgery. His poor little swollen mouth and face, and the oxygen mask, and his grogginess. I could tell he was in so much pain. He couldn't even close his mouth. After we were moved into a recovery room, I was able to try feeding him with his bottles, and though he was very hungry, he couldn't really try because of how much pain he was in. That night was awful, trying to regulate his medication with the nurses, and then being woken up surrounded by a huge team of doctors around 6 am. I wasn't even sure how long I slept! They wanted to find out how much he was eating, and I told them, nothing! And then they explained exactly how the palate was repaired, and I was heartbroken for him all over again. The surgeon never explained in detail what they did, and now that I knew, I could not even begin to imagine the amount of pain Nathan was experiencing.

We got through those 2 nights and three days in the hospital, somehow. And the recovery, too. And as the months went on, Nathan just packed on the pounds! He was born at 8 lbs 15 oz, and at 9 months old when he had the surgery, he was only 15 pounds, the 1st percentile for his weight. He is now over 25 pounds and in the 60th percentile. So in a year he's gained 10 pounds and looks as chunky as ever. He's learning new words every day. He charms everyone who comes in contact with him. I am so glad we have him in our family.

He might have a few more bumps in the road. Possibly another surgery to fix the small hole that is still healing on his palate. We don't know how many more surgeries he will need. And his chromosome 22 duplication means he is at risk for developmental delays. So things are up in the air with him right now. But from what I can tell, he is a very average, stubborn, determined little toddler who amazes me with his cleverness and cuteness. And when I drive by the hospital, I don't get those horrible feelings anymore. We've moved on from that, at least for now. But August 20th, 2013 will always stay in my memory.

Nathan's new specialist: speech therapist

I am still amazed at all I have been through with my little guy Nathan in just 20 short months. Since his birth, he has been seeing doctors at 4 different offices on a regular basis (this includes his pediatrician.) Now we get to add a fifth to the list: speech therapy.

When his ear tubes mysteriously fell out sometime around the beginning of this year, his ENT (ear, nose, throat) doctor recommended he begin speech therapy as soon as possible. In fact, she wondered why he hadn't been receiving it all this time. I told her he was seeing one as part of the craniofacial team, but all she did was make sure he was drinking correctly from the bottle, and listened for sounds he was making as a baby. Because the visits were not regular, (only every 4 months) it was not really speech therapy. So we took our ENT's advice and put in the request.

His evaluation about 6 weeks ago went very well. They said he would qualify because he needs help pronouncing certain sounds correctly, and help feeding out of a cup. I was told he would need to come twice a week for therapy. And this completely overwhelmed me. I was already about to begin 9 hours a week of therapy after school for Julianna, and Nathan already had someone coming here once a week for his early start help, and not to mention all the other appointments that fill up each month for Nathan that involve driving about 30 minutes one way (we average 2-3 visits). This therapy office is another 30 minutes in the opposite direction. Could I really add in another doctor at this point?

But then I started to think about how much he would benefit from this therapy, almost more than any other thing he's doing. He would be getting regular help from a professional, and I was also interested to see how they did speech therapy. Julianna has received it in school since she was 3, and I've never really sat in a therapy session more than once or twice, so I don't know much about it. I knew that in the long run, the drive and sacrifice of time (and most likely his naps) would be worth it.

So our Utah trip delayed his therapy a bit, and finally we went for the first time yesterday, the 5th. This therapist was so animated and fun, and had him sit in a high chair, and showed him some toys, and really engaged him in his speech. I would say he learned to imitate at least 3 words in just one half hour. She would hold his mouth at certain times to help him use his lips to pronounce certain words appropriately, and she started training him on the Avent 360 sippy cup. As I watched my little boy engage with this complete stranger, I suddenly felt tears come to my eyes, thinking about how far we had come already, and that this new little journey for him would be so beneficial to him. I felt overcome with gratitude, thinking about how much I have been guided in getting him the right help since his birth, and how overwhelmingly helpful every single doctor has been so far. What would I do without these amazing people who care so much about my own child and will work hard to improve his quality of life.

This all may sound silly to say, considering he's not even 2 yet! But sitting there in that little therapy room really gave me a chance to reflect, and to realize how blessed I am with Nathan. He is doing so well, and he has the cutest personality and smile, and I just know he will go so far in life despite his little birth defect and chromosome duplication. The more doctors, the better, at this point! Yes, it's tiring and stressful to be going here and there all the time, but Nathan is worth it! I would do anything and go anywhere to help him achieve his potential. We're going to get there, one little step at a time.

Our trip to Utah, and what I learned about Julianna

(Before I share our experiences on our trip, I want to make a little disclaimer: We had so much fun being with family! We live far away from most of them, so to be together is a huge blessing. But every time we take a trip as a family, we learn a lot about Julianna and how we can make things better. So this post is mainly about the challenges we faced, and how we tried to overcome them.)

We left July 3rd for Utah, to see our new niece get blessed, and to visit my family there. This time we broke up the drive and stayed the night in St. George. Besides the difficutly in getting Nathan, our 19-month-old, to sleep that night (we made a makeshift fort over his crib by shutting the comforter in the door and weighing it down on the other end with our cooler) it was a great idea. We were able to go swimming as a family and have a break before we finished the drive the next day.

We arrived at my mom's house to drop off some things and say hi to one of my sisters and her kids, and then headed up to meet Joel's sister's family and see our new niece. They got us into FantasyCon in Salt Lake City for free, so we got to see some interesting displays, people, and a giant dragon. Julianna even waited in line with Joel to shoot some arrows at a target. Then we headed to one of their relatives' houses to hang out and watch fireworks.

The word "fireworks" used to fill Julianna with dread. We have spent the last many years doing fireworks at Joel's mom's house, not too far away. I remember when she was around 3 or 4, she would sit inside behind the sliding glass door because the sound was too loud, and the bright colors scared her. Finally, just a few years ago, she was able to move outside and watch, but with much caution. This year, she couldn't wait for the fireworks, and stayed out longer than anyone else watching them. I love seeing progress.

Another thing we did in Utah was hike the Y mountain. Joel and I both graduated from Brigham Young University in Provo, Utah. The nearby mountain has a big Y in it, and a hike that you can do to get there. I don't remember it being very difficult or long, so we decided to try it with our kids. Nathan literally cried the first 10 minutes straight as we situated him in the hiking backpack and got started. Once we got into the hike, Blake stayed with Joel and Nathan, and it was Julianna with me. Before long, we were lagging behind them, and Julianna complained of her legs hurting, and wanted to stop at every switchback to rest. There were times when she wanted to stop, but I kept encouraging her. When we made it to the top, it was a big sense of accomplishment for both of us! The way down was not any easier, because she felt like she was sliding down the trail at times, and her shirt sleeves were bothering her and causing her to stop and scream about it. But we survived, and it was a great experience.

 

 

Another day we decided to go to a nearby water park. I knew that this would prove challenging, and I was completely stressed about going. Nathan has the tubes in his ears, which means he cannot get water in them, and lately he has not wanted to wear his ear plugs in the water, so I had no idea how I would avoid getting water in his ears. Julianna, as I shared recently, just finished swimming lessons, and made big gains, but the crowds, people splashing, and the noise would be a challenge for her. She immediately decided she was going to wear a life jacket once she saw them hanging up, and she mostly wanted to stay in the lazy river, and run in the water spraying area.

 

Our passes included a free pizza and drinks. Now most of you know Julianna is on a gluten free, dairy free diet, and pizza clearly has both. As I waited in a very long line to get the food, I thought, I'll just take the cheese off, and she can eat the crust. I got closer and realized, duh, the crust has gluten!! I began to rationalize, thinking that eating pizza just this once would be okay. Then I realized I did not have my debit card with me, and there was no way I was standing in that long line again, so it made even more sense to just have her eat the pizza. But then, when I went to order, I suddenly had the idea to ask if I could substitute two of the drinks for french fries. Unfortunately, they could not do that, but they said if I went to the pick up window, I could order the fries there instead of waiting in line again. So that's what I did. People are really understanding when your children have special needs, I have found. And to end the day, Julianna went down one of the smaller slides! Progress! (she is on the left, Blake on the right, below) And Nathan did not get water in his ears. Success!

 

 

 

The very next day, my dad rented a giant 20-ft waterslide for the backyard and everyone was having fun on it. Julianna went down before I even got out there, and told me she was brave and did it! I couldn't believe it! But the slide was scarier than she thought, so Joel spent the rest of the day convincing her she could go down one more time. She did, with a bribe to get a dollar store prize. Yes, this is how we get Julianna to do hard things. It works, most of the time.

 

The last experience I wanted to share was our trip to the zoo. Almost my entire family was able to go together, a rare experience. I was dreading it, knowing how challenging it would be with Julianna. Right when we got to the front gates and were waiting for everyone to arrive, there was a little pond where people had thrown pennies in. I gave my kids and some of their cousins a penny, and everyone threw theirs in, except for Julianna. She said, I want to save my penny, because I can buy something in the zoo instead. I told her she could keep the penny, but that there was nothing in the zoo that would cost one penny. So we went in, lasted no more than 2 hours because of the extreme heat, and as we were all leaving, she kept asking me about spending her penny, and that she wanted to look at the toys. I told her there was nothing she could buy with a penny, and that we weren't going to let her look because she would want to buy something. This resulted in a huge tantrum, the biggest I've seen in a long time, so big that people were stopping and starting, whispering to each other, shaking their heads, etc. I told her none of the cousins were getting anything, so it wouldn't be fair for her to get something. I ignored her, I tried to help her, and in the end, I had to drag her out of the zoo kicking and screaming, all the way to our car. It was awful. But this is the chance we take whenever we go to a public place. Sometimes things go really well, but usually we are faced with major tantrums. This is our life. I don't think my family even knew how bad it could be, because she is really good at hiding it most of the time.

 

 

Julianna with Blake and their cousins Will and Bradley.

 

 

Later that day, as we were packing our car to leave, she had another major tantrum. My mom and dad came running out, because they thought she was really hurt. I broke down crying, because after over two weeks, I was done! After some comforting words, we were on our way home, and I was looking forward to being there again. Familiarity is good for Julianna.

 

I sometimes think I have valid reasons for never taking Julianna on family trips, or to water parks, or hikes, or zoos, or any public place, really. I know that tantrums and explosions are inevitable. And this time I had to factor in the diet and making it work while we drove, and at my parents' house, too. I could have easily thrown in the towel and said, sorry, we aren't coming, it's just too hard. But so far we never have. And we will continue to make the trip, because I feel that every new experience helps her to grow, to develop new skills, to expand her horizons. I would be a horrible mom if I didn't continue to push her to do things that are out of her comfort zone. No matter how much it stresses me out, and to be honest, my stress level is always extremely high, I will push forward. She is part of our family, and part of our life--nothing is exempt from her, and the greatest thing is, she wants to be a part of it all, too!  

 

 



Big Surprise at the ENT (Ear, Nose, Throat) for Nathan

Sometimes life throws you a little curve ball, just a little one. But enough to make you rethink a lot of things, and realize your priorities once again. Nathan is certainly my most unique child...born with a cleft palate, but no cleft lip, which usually happens only in girls. Then we find out he has the Chromosome 22 microduplication which so far they think is not affecting his development (though I am still extra watchful considering what I've gone through with Julianna). Then after his surgery, he is in the 1% of babies that ends up with a hole, or fistula, that might need repairing in the future (not the near future, something we are still celebrating!)

But there's one more thing I haven't really talked about, something that I didn't think would ever become a problem, and that's his Eustachian tubes, or ear tubes, that were placed at the same time as his palate repair back in August. Very routine procedure, for many children. And we were told the tubes would remain in place for about 6-18 months, at which point they would determine if he needed another set placed. The tubes were not even a concern, until yesterday, when he went to the ENT for an easy follow-up. One of those appointments where you think they're just going to look in the ears and everything would be fine. Well, it wasn't.

The ENT always asks about his speech development before she looks in the ears. Last time I was in, his speech was coming along nicely, and the hearing test confirmed everything looked great. That was 4 months ago. Right after he turned 13 months, he began saying words, and imitating sounds that I would say to him. He was picking up so many that I began a list, which I've kept on my fridge. The list is dated January 8th, and by the end of January, I had at least 15-20 words that he could say or imitate. I was so pleased with his progress.

But then suddenly, it seemed like he wasn't saying all those words as much as he used to. And when I would try to get him to mimic my words or sounds, he didn't want, or even try to. I wasn't super concerned, but became more watchful. And what I noticed is that in the months of February and March, I didn't add one single word to the list. In fact, I began looking at that list and circling the ones he still knew. But again, I rationalized by saying he was still just 15 months, and that the language would come. He still knew at least 5 words.

So I told all of this to the ENT, and she looked a little worried. She asked if he was getting speech therapy, and I told her no, not for forming language, but only for feeding issues. So first she ordered speech therapy sessions, because she thinks every child with cleft palate should receive it. And then she looked in his ears, and announced to us that BOTH tubes were no longer in place, and that one ear had fluid building up. His tubes didn't even stay in place for 6 months! She explained that his decrease in language was most likely a result of the tubes falling out, and that he hasn't been hearing properly for a few months now. And that his tubes needed to be placed again, and right away.

Wow, we sure weren't expecting this at a little follow up appointment. Made me so glad that I don't take follow ups lightly--I could have gone months longer and his speech would have become even more delayed. And the great thing is this doctor takes speech development so seriously that we are already scheduled for April 15 to have it done--not even two weeks away. But it is another surgery, where he will be in an outpatient area and be put under anesthesia to have the procedure done. We were told the process is pretty quick and we will be going in in the morning, leaving in the afternoon. So it's much easier than the first one, of course, but it's just another thing we have to arrange, get ready, etc. It wasn't in our plans, but I think what I have discovered with Nathan is he does things his own way! He defies the odds, and definitely keeps us on our toes.

My Time Out for Women Experience

This past Friday and Saturday night, I had the wonderful opportunity to attend an event called Time Out For Women. There are inspirational speakers from all walks of life, beautiful musicians that share their talents, and overall a great uplifting experience. Here are some of my favorite quotes that stood out to me:

"Take the rain with the sunshine."

"It is not the length of our life, but the depth that is important."

"We dream to make meaning of our lives."

"Righteousness will come to pass when you dream."

"Rise to the stature of your divinity."

"The trick is to enjoy life today, not the better ones ahead."

And then, in a poem shared by one of the speakers, my entire life seemed to stand still. Suddenly I had more clarity and understanding in my life than I've had in a long time. This one statement applied to me so much that I was in tears, bawling, and couldn't stop. So here it is:

"I got nothing I prayed for, but God gave me everything I needed."

Now, I guess you could say this isn't entirely true, I have gotten things I've prayed for. But what about those things that I did pray for, fervently, with all my heart and soul, and then I didn't get them? What about those times?

For example, what about the 8 months of praying during my pregnancy with Nathan, every single night, that we would have a healthy, normal baby with no complications? I like to think that I have great faith, and I was very confident that my Heavenly Father was aware of my current situation with Julianna and Blake. I had my hands full! But I knew it was time to have another baby, so we did. And I wanted to have a baby that I could just love without worries or scary moments or lots of doctor visits. I really didn't think that was selfish of me at all to want this. So when Nathan was born, and we found out he had the cleft palate, it was a huge shock. How could our prayers have not been answered? I remember the silence in the room after the nurses had finished their brief explanation about bilateral cleft palate. I've mentioned before that I felt a peace and confidence come over me soon after that visit from the nurses. But if I'm to be completely honest, before that peace, there were definitely some thoughts, during that silence as Joel and I sat contemplating what we were just told, that veered toward the "why us?" and "how could we be given another child with specific needs?" Especially after praying so long and having as much faith as possible. We prayed for a baby without challenges, but we were still given one anyway. How could this happen?

But wait...what about the other half of that quote? ...God gave me everything I needed...is that why very soon after these thoughts, I felt a peace and comfort come over me? I began to see very soon after his birth that our prayers are not always answered in the way we hope them to be. And sometimes that is hard to accept. It's only after we move forward, and trust again in Heavenly Father, that we see how much we needed what we didn't pray for, if that makes any sense. My faith wasn't done being tested yet....and I know now that this baby is helping me learn things I haven't learned from my other children. He is taking me on a new journey and helping me become an even better mom than I ever thought I could be. So yes, my prayer was not answered, but God did give me everything I needed in my little boy Nathan--he gave me a new level of faith, courage, and understanding that I didn't have before. He gave our family a little baby boy that we all love and cherish, that we laugh at, and that has brought us closer than ever before. He gave my children a little brother that they can learn to love and accept and teach and cuddle. And he gave me another beautiful redhead, too.

It's true, my life as a mom is nothing what I expected it to be. I never imagined I'd be a mother to such unique children. But what I do know is Heavenly Father knows what each one of us needs to learn while we are on this earth, and what I am learning is exactly what I need to be learning. As I go forward with this blog, I hope to find many more of you out there and to learn from your stories as well. Attending this event also helped me realize how important it is to share our struggles and joys, because it makes us all stronger in the end. I feel like a completely different person now. I know what I need to be doing, and I will keep on doing it!